I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Pre-Dialysis => Topic started by: MooseMom on March 11, 2011, 03:05:52 PM
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Please do not feel obligated to either read or comment on this. It is just me, rambling. ::)
I've never been forcefully aware of my CKD. It's just a lot of numbers, a lot of pills, a lot of anxiety, but physically, well, I've probably felt the effects but just didn't recognize them because I've had CKD for so long that it is hard to differentiate those symptoms from the signs of just getting butt-older.
I like to walk. It's my way of keeping fit. I've been walking for years. However, this past winter was particularly harsh. It was very icy. I live at the end of a cul-de-sac, and the city doesn't have enough money to salt my end of the road. Just walking out of my driveway became dangerous. So, for most of the winter, I didn't exercise as I had done in the past.
I don't know if it is CKD, age, winter blues or lack of exercise, but I am really feeling the fatigue. At my last neph appt, my hemoglobin et all were just ever so slightly below normal as they have been for years; there has been no substantive change in my numbers to warrant this fatigue.
To combat it, I'm thinking that I must recharge my battery, so now that the weather is better, I've been walking again, but by the end of the evening, I'm wiped out.
Today I did some gardening, the first gardening I've done since November, and it was bloody hard work. I had to really pace myself and not allow myself to do everything all in one day. Almost immediately upon starting, I barely grazed my right arm against a spent siberian iris stem, and the skin broke and started to bleed. So before I even got started, I had to drop everything and attend to my bloody arm. I take lo-dose aspirin each day and have done for 6 years, so it's no great surprise, but my skin seems to be suddenly so much more fragile.
I feel like my body is starting to succumb.
My husband has 4 kids, all either in college or about to go. The youngest comes to us every other weekend. He has been working for the past year so does not spend all weekend with us, but he has just gotten a leave of absence so that he can get a prodigious amount of school work done. This means that for the next couple of months, starting tomorrow, he will be with us the whole weekend. This kid is great, he really is, but he is a 17 year old boy, and like all 17 year old boys, he creates domestic chaos that causes more work for me. Normally I don't mind, but I just don't have the energy for it anymore. Yes, I could say something to him or to my husband, but they really do not understand the profundity of my fatigue, and I'm afraid of coming off looking all whiney. I figure I can just suck it up and enjoy the few weekends we have left with him before he goes off to college.
My husband's eldest daughter is coming in from college for the weekend. We have not seen her in at least 2 years. I've never been close to her. She's very nice, but we've never had the opportunity to even have one private conversation. She is friendly but emotionally aloof. We are meeting her for lunch on Sunday, accompanied by the above mentioned stepson. I don't want to go. I don't have the energy for it. I don't have the energy to engage in conversation with someone I don't know well. She has hurt my husband, unintentionally I am sure, through her casual indifference, but she is in college and that's what a lot of college kids do...forget their parents. I know my husband feels bad, and I don't want to see his sadness.
It's hard going through life knowing that your body is under assault and that there is nothing more you can do. It takes every bit of energy I have to get out of bed in the morning and continue on; I don't have extra energy for anything else.
That's my pre-D ramble. I feel a bit better now.
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I know so very, very well this place you're coming from at this point in time MM. I used to feel like a piece of blank paper that wanted to fold itself over and over until it was very small and could be hidden somewhere. :grouphug; :grouphug; :grouphug;
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I know so very, very well this place you're coming from at this point in time MM. I used to feel like a piece of blank paper that wanted to fold itself over and over until it was very small and could be hidden somewhere. :grouphug; :grouphug; :grouphug;
One of the very first things you ever told me was that you believed that this was the hardest part of the CKD/ESRD journey. I'll always remember your words. On this journey, you always have to adjust to a new reality. I am noticably more fatigued today than I was this time last year, although my labs wouldn't support that sentiment. Maybe my fatigue has been hidden by the adrenaline rush you get with fear. Maybe I am not quite so fearful anymore, and maybe that means I require less energy to get through the day. Is this "acceptance"? I don't know.
I like the "blank paper" analogy. I hate to think you ever felt like that, but I'm happy that that is in your past, not in your present.
You've always been so kind to me, and I appreciate that so much. :cuddle;
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UPDATE...here's something that made me feel even worse today:
My husband and I were in the car this evening; we had decided to go out for a cheap and cheerful dinner. I explained to him that I wasn't sure that I wanted to go out for lunch on Sunday and that he and his kids should just go. I explained about my energy drain and also added that it had been a long time since I had seen his daughter and that I believed that I had just lost my vitality and that I looked sick. After the obligatory, "You don't look sick to me. You're still attractive," he said that his daughter knew I hadn't been ill but was probably unaware that I was "seriously ill". He had never called me "seriously ill" before, and I guess that it is true. But hearing your spouse SAY it...well...It's not like I'm denial (soooo totally far from THAT), but still...hearing the words really shook me. :'(
Can't run away from that...
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moosemom it can be hard to see yourself in the reflections of other people's perseptions. I overheard Aaron talking to his mom on the phone when I was napping, and something to the effect, "...I have a lot going on in my life right now. I have a sick girlfriend who needs me and I don't have time for all this..." Even though sometimes we feel as though we bare this disease burden alone, we sometimes get a awake up call that those closes to us bare it as well.
At least the hubs seemed understanding about how you were feeling. I am sorry you are feeling tired. Do you think maybe it could be mono?
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Well, MooseMom, at least your seriously smart to combat the illness part. I'm sorry that shook you up. :grouphug; It sounds to me like your husband is really understanding and after reading about all of the posts where families don't seem to get how tough and serious this illness can be, I'm glad to hear your husband so far seems to get it. You deserve that and a whole lot more. I wish we knew what is causing your faitgue. Unfortunately there are so many causes for fatigue. It does sound like you're taking steps to pace yourself and work around it. I hope the visits aren't too stressful. Hopefully you can set aside a little bit of time just for yourself. Let people know that's what you're going for so they can honor your time.
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The months and days leading to D are (or where for me) the worst. D has been a relief. One thing you must do is make it clear to everyone in your family that there are going to be days when you just CAN'T! My loving partner Dave would always push me to do a bit more than I wanted to do. He has learned (it is a learning process for everyone) that no amount of will or desire will allow me to do what I just can't do. I do what I can, when I want. I still sometimes do things even thought I feel tired with no energy. We are partners and I want to please him as much as he pleases me. I am so lucky to have him.
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billmoria, those are all good points. My husband says I don't look sick, so to him, well, I guess he understands in theory but not really in reality. When I talk of fatigue, he thinks a nap is all I will need. I tell him that there really is no adequate word for the fatigue that accompanies chronic illness. I don't really need him to understand, it doesn't matter. I will do what I can do and I will not do what I cannot do. He works hard and is often tired himself, so it's not like we are missing out on action-packed activities just because of my CKD.
But I know about wanting to push yourself so that you can please your partner. And you're right...it's a learning process for everyone. But part of the learning process is figuring out what you CAN do instead of constantly contemplating what you CAN't do. It's not always easy to recognize the good days when you are expecting them all to be bad. I have to be careful not to let CKD be my default excuse for everything, you know? "No, I can't do that because I have CKD" or "No, I won't get pleasure from this because I have CKD" or "Life is crap because I have CKD" (which is a refrain that is sounding all too familiar these days....must stop that!)
I'm glad your partner is so supportive. Again, it doesn't really matter if he doesn't UNDERSTAND. Actually, the fact that he stays with you and loves you DESPITE not always UNDERSTANDING is wonderful. You don't have to have walked in someone's shoes in order to offer love and support. You are indeed lucky! Hugs to your partner!! :cuddle;
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I'm also struggling with fatigue. Be thankful your partner is supportive, even if he doesn't understand. My wife got confused and angry with me that I didn't want to do things when I looked fine. She knew I was sick (came to all my neph appts) but couldnt process it. The onset of my disease coincided with the only period of unemployment I've ever had in my life. I got depressed, which made me more tired and withdrawn. The stress of my illness coupled with strained finanaces was too much; my wife left (actually persuaded me to leave). She says it wasn't about my illness but she had an affair with a personal trainer. It doesnt take Freud to figure that one out.
On the silver lining side, it has made me realize that I need to fight a little harder, push to get what I want. Previously I was very reliant on her to do things like argue with the insurance company and book medical appointments. Now I'm forced to do that myself, as frustrating as it is it has it's own rewards. Often (usually) I don't feel like going out with friends or exercising, but I force myself to do it. Sure, I've fallen asleep in a couple of restaurants, and that's embarrassing, but it's better than staying home feeling sorry for myself (been there, done that).
I'm trying to erase the word "can't" from my vocabulary. It may be difficult, it may be unwise, it may be expensive, but I can still do anything I want to do. Sometimes I choose not to, but that's my choice, not ESRD's.
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I also find myself growing wary quickly. I sometimes get up tired. I do my thing drive to work work drive home and by then i am shot. My drive is 61 miles each way and 8hrs at work adds up quick. I am finding it harder to get things done at home during the week. Today i mowed almost 4 acres and just riding around made me tired???. I took a cool shower to wake up and left for work. I stopped at th pistol range and shot some then came in here to work and i feel like a nap right now!!!. Ohy well it's all part of it i guess. hang in MM and a cool shower does help motivate.... :puke;
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I know this thread is a bit dated, but it sure "speaks to me".
I'm having ups/downs dealing with getting fatigued, having trouble concentrating sometimes, and all of the rest. When i signed up here at IHD I thought I had gone through all of pre-D emotional upheaval, but I find that it is still coming up now and then. I read about the many people here on IHD who (unlike me) have been undergoing the big "D" for YEARS, (and MANY around here have had LOTS of other medical issues in their life to deal with as well) and I'm feeling guilty for feeling sorry for myself for (merely) facing up having to start D.
I do not like the "unknowns" (hah-what a shock), how much longer can I get by without D, can I realistically hope to just "hold steady" where i'm at, will I be able to continue working and feeling like I'm contributing to Society afterwards, will the transplant team approve me? I know I'm guilty of worrying about too much, and need to let each day come as it will, but, well it just gets too me sometimes.
Been having lots of trouble sleeping through the night for the past couple of months. Like anybody, I do my best after a good night's sleep, and it really is hard to do a full day (like a day like today) when I'm both sleep deprived and dealing with whatever fatigue is due to CKD.
Just whining.
---Dan
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Dannyboy, I have been "pre-D" for 20 years; it has been for the last 7 years that I came to see just how serious my situation is. Please allow me to ramble back to you; it's possible that my blathering may give you a grain of solace. I have learned a few things over the past 7 years, and maybe some of these lessons learned will help you out.
First of all, in my very humble opinion, guilt is self-indulgent and puts a further burden on your shoulders. You have enough on your plate as it is, and you don't need to willingly add a serving of guilt. There will always be someone who you feel has it harder than you do, but their suffering doesn't make your own less painful. I personally don't feel better when I see someone hurting more than me, and I'm sure you don't, either.
If you have periods where you feel sorry for yourself, well, so what? I know there are times when I have the biggest pity party known to man; I just let myself feel what I feel, and then I get bored with the self-pity and move on. Allow yourself to feel what you feel, and then you can move on, too. It's just too much like hard work to always keep your feelings submerged because you think you have to in order to "suffer nobly." I think you will know when self-pity starts to corrode your entire life, and that's when maybe it is time to adjust your thinking.
Knowing that you are headed for dialysis is fraught with its own terrors. As rotten a prospect as dialysis is, at least once you have started, you have some modicum of control over your treatment (if you so choose), and the fear of the unknown is largely passed. If you get good dialysis (especially when you are on nocturnal or frequent hemo, for example), then you can actually feel BETTER than you did when your egfr was at its pre-D lowest. Pre-D people have the most restrictive diet of all renal patients, so being pre-D is a very tough proposition.
As most people on IHD know, I have had real trouble coming to terms with my situation. I have consulted psychiatrists, psychologists, therapists, naturalists, bio-feedback specialists and even a hypnotherapist. Nothing that any of these people had to say has ever eased my anxieties. The only thing that will really help me is a cure, and that's not going to happen. I don't know if I will fare well on D...that's another unknown. I tell you this because what you are feeling is normal and common. You will have good days and you'll have days where all you feel is despair. It's exhausting.
Please don't try to quantify your fear. Please don't worry about how much you are worrying. Please try hard not to look too far ahead (difficult to do!). Please try not to let yourself be overwhelmed. Use your worry to learn as much as you can about your condition and your treatment protocol, both pre-D and post-D. Start learning about transplantation. USE your worry to your benefit. Don't allow it to paralyze you.
Many people in our situation find the use of anti-anxiety meds to be very helpful. If you feel that your anxiety is leading to depression and/or inertia, this is an avenue you might like to explore.
I know for a fact that anxiety is exhausing. Anxiety will deprive you of good sleep, and the exhaustion continues. I find that a swim or a long walk outdoors revives me and, most importantly, improves my mood. If CKD has made you anemic, that will cause fatigue but can be treated.
You just come onto IHD and whine all you like. Everyone needs a safety valve, and IHD is tailor-made for that.
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Dan, I'm glad you revived the thread to share your feelings as well as allow for another incredibly well stated reply by Moosemom. I wish I could add more but I just wanted to thank you both for helping me sort through the very same feelings I have been having recently.
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I'm approaching dialysis time. Nephro sent me to vascular surgeon for fistula work up. Better to do it early and never need it than to delay and need it now, I guess. But I went to nephro as I'd gained about 10 pounds in little more than a week and he jumped up my lasix dose from 40 mg/day to 240 mg/day which has solved the nephrotic syndrome problem for now. I can wear my old clothes again and don't need a whole new wardrobe after all!
GFR is down to 18, and the trend is headed more or less regularly down.
Am I happy? No. But given the alternative, I can accept dialysis and the waiting list for transplantation.
The thing my nephro told me was that dialysis would regulate the fluid balance (if I was good and followed directions, that is) without all the ups and downs of chronic medication adjustments. With nephrotic syndrome, I've had DVT, so I'm on Coumadin whose dose goes up and down depending in part on how much water I've taken on. Ditto for insulin, although to a lesser extent. In a way, I'm fortunate that I have to stick my finger 3 or 4 times per day since if it bleeds too easily, I know my blood is too thin. If I have to squeeze a drop of blood out, its too thick. And, I'm told it will also help regulate blood pressure so maybe I'll be able to drop some other meds I take for that problem.
I'm guessing I'm in for lots of medication adjustments if and when I start dialysis' but that I have a decent chance of stabilizing once the adjustments are made.
MooseMom, I know about tired. And sleeplessness. And the crazy itching. And the restless legs. There is no upside to CKD at all. I know being hooked to the machine will suck, too, physically as well as lifestyle alteration to the max. My wife has just started to realize that things may change soon for the worse. CKD hasn't been too much of a problem for her except those days I was hospitalized with out of control blood sugar (thank you, corticosteroids!) and that we've changed roles as far as who is cold and who is warm. Like your husband, she's never had a chronic illness so can't really understand that my point of view differs from hers. Often it seems like I'm 25 years older than her now, even though we were born the same year. I've realized I can't do anything about it, however.
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Malaka, I don't know why, but (*finding wood to knock on) I've not yet been bothered by fluid retention. I've never had lasix. I am not sure about the difference between the way membranous nephritis syndrome manifests itself from that of fsgs. Since fluid regulation does seem to be a particular problem for you, have you given any more thought to nocturnal or home hemo? Those two modalities seem to be more effective than thrice-weekly D when it comes to the more efficient and less traumatic regulation of fluid.
I've been on a hill of pills for 7 years now, and all in all, I haven't had to readjust things that much. But I can imagine it must be really frustrating to have so many med alterations. And yeah, dialysis will mean even more changes, but perhaps those changes will be more permanent as you've suggested. Medicine is an art, and we just have to be flexible, I guess, and tinker until we find what works for us.
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I know it's been said many times before, heck I've said it: It's great to be able to interact with others who are dealing with same/similar issues. So THANK YOU to all of you.
Moosemom: Thanks for your observations (and "permission" to whine LOL).
Kim: Yeah Moosemom (and others) are good listeners 'round here.
Malaka: I've had water retention for quite a while, too. Lately it's getting much more of a PIA. Legs are swelling so much sometimes close to not being able to slip Levi-type pants off (I have a muscular calf though, so that doesn't help). My dieuretic doesn't seem to be working as well these days.
Vein mapping coming up soon, followed by "plumbing" in my arm.
---Dan
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DANNYBOY have your tried Ted hose/Compression socks to help with the fluid retention in your legs?
xo,
R
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No, never heard of them (compression socks). How do they help?
Is "Ted" the brand?
--Dan
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Ok, found 'em online DUH, checking them out.
Thank you.
---Dan
Edited to add: Wow, the things I never heard of! LOL. An article I read just now mentioned being sure they fit properly and having one's ABI [Ankle Brachial Index] checked prior to get the right type, compression-wise. I realize that I have some tighter-fitting regular socks that are apparently doing the same sort of "compressing", cause after wearing them most of the day, there is a HUGE "notch" where the sock is and the leg gets "fatter" from being swollen. My Diabetes doctor told me to wear *less-tight fitting* socks, but now I see there's probably a better solution. Will check with my Neph next visit. I keep asking them if the swelling is a MEDICAL problem, or merely just an unsightly deal, sounds like it can be a medical issue if it gets bad enough?
--Dan
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Well put. I've never heard it said that way before. :)
I know so very, very well this place you're coming from at this point in time MM. I used to feel like a piece of blank paper that wanted to fold itself over and over until it was very small and could be hidden somewhere. :grouphug; :grouphug; :grouphug;
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It is a medical issue when you are prone to development of blood clots which are often Deep Venous Thrombosis (DVT) which, if the clot breaks loose, can go to the lungs causing pulmonary embolism which can be life threatening. I had that last year and was given the choice to stick myself with a med Lovenox using a fairly long needle in the belly or sit in the hospital and let the hospital staff do it for me. Being on insulin for Type 2 diabetes (Metformin doesn't work any more) I chose to stick myself.
Today is vein mapping day. That's the easy part, of course.
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Hi Dannyboy glad you found the Ted hose stockings. yeah the swelling is a sign that your kidneys can no longer get rid of the fluid in your body so it starts to collect in places like the ankles, hands, face, abdomen, and lungs!!! Be careful b/c the extra fluid in your body starts making your heart pump harder to get the fluid moved around. If it was me I wouldn't want to keep putting the strain on my heart. My brother ended up getting paracarditis (fluid around the heart) and he had to be admitted and get the fluid drained. Better to get on D and keep your heart safe I say!!
The Ted hose are pretty long they will go up to your knee. It helps keep the fluid into the vascular system. I have heard that sometimes the fluid in the ankles can start to drain out of the skin and that could be another infection that us ESRD do not need!!!
Take care,
R
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Thank you rsudock. A portion of the swelling seems to be coming from by BP meds, I've cut back temporarily on the Norvask and the swelling seems less after a short time, not a very scientific test of course. My BP is ok (so far), go figure. Gonna get into details about this with Neph on next visit for sure.
BTW, glad you are doing good.
---Dan
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malaka, let us know how the vein mapping goes. My vascular surgeon was very experienced, but he had an extremely thick Korean accent, and I had a hard time understanding him as he explained just how my blood vessels would work after the surgery. So he got out this large purple marker and started drawing all over my arm, but he kind of changed his mind during his drawing, and my arm ended up more purple than flesh-toned. We both just sat there, looking at my arm, giggling.
I'll be interested to know where exactly your fistula will be located. Good luck!
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@moosemom, re: purple marker and accent.
I know it's serious, but picturing that scene cracked me up.
@malaka: How'd it go?
I've got vein mapping scheduled in just over 2 weeks. Not sure how soon after that they'll do the surgery.
---Dan
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Well, it WAS funny....
By the way, it would be a good idea to find out just how experienced your surgeon is. My neph just automatically referred me to this guy, but I did ask my neph about the surgeon's amount of experience. He was the one who warned me about the surgeon's accent. My mom had to go on dialysis after an aortic aneurysm repair destroyed her kidney function, and the neph she was referred to had a part interest in a vascular clinic, so of course he just referred her to that clinic. They did a terrible job creating her fistula, so much so that she had to use her cath for 18 months. It was a terrible ordeal for her, and finally one of the D nurses took pity on her and told her to find another surgeon and not to go back to that clinic (apparently it was generally known amongst the staff at the D clinic that the vascular clinic wasn't very good). So my mom ended up going down to the Texas Medical Center to one of their top-notch cardiovascular surgeons, and he created a truly fab fistula for her.
Anyway, my neph trusted him, and when I actually met with him the first time, I asked him about his experience in creating AV fistulas. I was able to understand that he has been doing about 20 a month for years, so I figured that was pretty good.
I had read posts from IHD members who, after initial surgery, had to have another procedure to "lift" the vessels closer to the surface of the skin for easier use. After the surgery but before I woke up, the surgeon told my husband that he had lifted the vessels and had stitched them to the underside of my skin (ewwww!). My husband didn't understand the significance of this, but I did, and boy, was I grateful AND impressed. So, when you all go in for your vein mapping, it might be an idea to ask about whether or not your vessels may have to be "lifted."
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As for the vein mapping itself, I found it a very easy procedure with no pain at all (except a little stress on my shoulders where they stretched my arms out like you're on a cross). But at least in my case the radiology team was kind and professional. Thumbs up to Carolinas Medical Center! :2thumbsup;
Two things I would make a point of from my experience.
First, the contrast dye used for most patients is apparently toxic to the kidneys. I'm allergic to the contrast dye so that forced a conversation about the alternatives. I did not know that the dye could harm your kidneys. Something to discuss with the radiologist BEFORE they start. In my case I think they used CO2 gas for the vein mapping.
Second, the room where they do the procedure is about 45 deg F. They gave me heated blankets to put on, but that didn't help much where I made contact with the cold metal tables! Where something warm if you can! If they force you to wear a hospital gown, have them put a blanket underneath you before they start. It took about 15 minutes and I was shivering by the time they were done. (The staff all wore thick sweatshirts.)
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RE: Vascular Surgeon's experience. Yeah, I hear you moosemom. I already checked him out, said to be excellent, with "awards" for his work doing fistulae. This is yet another example of why IHD is so good.....I knew to check up on the 'doc from reading others' experiences/outcomes. So I'm hoping I'll have an excellent job done. Most/all of us on IHD are very pro-active it seems to me, we recognize that knowledge is essential, that it is good to sort of keep an eye out/look over the shoulder of what various med types are proposing or doing. Like you, I'm not afraid to speak up and speak my mind.
@Willis. Sheesh....ice cold room: Thanks for the heads up. They're sending me an information packet, so maybe it will have comments about that sort of thing. I thought they just used ultra-sound to the mapping.....I will brush up on the dye issue, i recall a recent thread on this. How long between the mapping visit and the actual surgery??
----Dan
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My vein mapping was done in the surgeon's office with just a little portable ultrasound machine (and the surgeon's purple magic marker!). Willis, why was your mapping so complicated? Do you have other vascular issues? I didn't have any dye or gas or anything like that.
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My vein mapping was done in the surgeon's office with just a little portable ultrasound machine (and the surgeon's purple magic marker!). Willis, why was your mapping so complicated? Do you have other vascular issues? I didn't have any dye or gas or anything like that.
Well, that's a good question! I don't know. I have no other issues and had passed a stress test just one week before. I went to the vascular surgeon who my neph told me later was in his opinion the 2nd best of about 50 surgeons in the region. I believe he was correct because he did both the AV surgery and the PD cath with excellent results. I don't remember getting the option to do an ultrasound...probably just the surgeon's preference. The vein mapping wasn't even a minor procedure really. After getting a number of preparatory tests, I walked in, got on the table for about 15 minutes, and walked out. Even simpler than ultrasounds I've had with no gooey mess. (Certainly a lot more expensive though!) :P
DannyBoy: I had my surgery about two weeks after the vein mapping. In my case I wanted the fistula on my left upper arm and that's were I got it.
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Hmmm, willis, you're probably right; it may just be a matter of how the surgeon prefers to do the mapping.
As for how long it takes to get from mapping to surgery, usually that's just a matter of the availability of the surgeon and the OR. All you really need is enough time to prepare for anesthesia (like fasting or whatever your hospital requires).
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rambling while on dialysis: I had a bacterial blood infection. I was in hospital for 15 days on a very powerful antibiotic. When I got home had 5 more days of antibiotic drip from district nurse. Had to be re-canulated - always a problem for me - and it did not work. Had to go in and have another port put in. Good news: the infection is gone. However, I am very weak 2 weeks later. They drew blood last night - I am on MWF in clinic. My white cells have recovered to normal. However, my red cells - which carry oxygen and thus energy - are still low. I may have to have blood transfusion which they will do in dialysis. It all depends on the results. I had to beg off making dinner for my overworked baby. Dave, like always, took it like the great person he is. I am so lucky to have him :cuddle;
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So sorry to hear about the blood infection, Billmoria - but so happy to hear you cleared it. That is some very serious business. I hope your RBC count gets back up soon so you get to feeling better. All the best.
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billmoria, man, you've had a rough time! It sounds like you are on the road to recovery, though, but take it easy.
What is your favorite meal to prepare for Dave? When you don't feel up to cooking, does he usually cook, or do you get a take-away?
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Dave cooks sometimes but he is disabled and standing for a long time is difficult. I try to make a roast dinner on Sundays: lamb, beef or chicken with roast potatoes (not for me). and , of course Yorkshire pudding, and veggies. I have not cooked a real meal in a month. We order takeaway but try to limit that.
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Vein mapping was done in surgeon's office last Friday by tech who told me all her medical problems. Other than that the gel was icy cold, not really even aware it was being done. She did both arms, just in case, but I made it known that I was right handed. Because my veins are "patent" (i.e. visible on the u/s device) it took maybe 1/2 hour from waling into the room to walking out. Tech told me with older, frailer people, sometimes its harder to find the veins, so they set aside 1/5 hours for the procedure.
Question to those who have been there: how long will I be "disabled" from the fistula creation? I thought of this while I was installing a window a/c unit this weekend, and mowing the lawn, etc. It may be a great excuse to be lazy, but I do have to plan for fall chores now that the spring/summer ones are nearly done.
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Question to those who have been there: how long will I be "disabled" from the fistula creation? I thought of this while I was installing a window a/c unit this weekend, and mowing the lawn, etc. It may be a great excuse to be lazy, but I do have to plan for fall chores now that the spring/summer ones are nearly done.
Shhhh! Just let everyone keep thinking you can't lift anything heavy forever...it will get you out of helping your friends move or other hardwork you wouldn't want to do even if 100% healthy... :rofl;
Otherwise, just do what you think you can handle without overdoing it (that's after 3-4 months healing of course--be careful for awhile).
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I've never felt "disabled" because of my fistula, but as with any post surgery wound, you have to be careful while the wound heals. The main thing to think about is to protect the "junction" point where the artery and the vein are attached. On the other hand, you should be encouraged to use your fistula arm as normally as possible because that strengthens the vein walls, just as would happen with any exercise. I think basically that if you've never done heavy exercise with that arm, after fistula surgery is not the time to start lifting heavy weights, but if you have been used to lifting heavier weights, you should be able to continue to do so after a while. My surgeon gave me the speech about not having bp or iv punctures in that arm, but he and my neph told me that other than those things, "Ignore it, " and that's a direct quote.
I think you should ask your surgeon specifically. We can give you our experiences, but they may be irrelevant to you.
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I know I'm supposed to be careful, but I was hoping it would be more like dental work that's o.k. to use in a few days. I guess not. Looks like a "easy" rest of the summer for me, then. I still need to find one of those NBA type arm sleeves which I suspect are more used there to cover up tats than for therapeutic purposes!
Tomorrow, as Scarlett once famously said, is another day. For me, its a repeat second opinion day at University of Michigan nephro clinic. Nephro there wants a second biopsy to see if I'm just inflammed and therefore treatable or scarred and not treatable except by dialysis or transplant. I'll go along with it. What do I have to lose?
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Doc called and she said: "There is no contraindication to stopping your anti coagulant therapy, so we will proceed with the biopsy." Why do they talk like that???? Wouldn't it be easier to say: "you can stop taking your coumadin X days before the biopsy."? Oh well, I've been under treatment long enough to begin to understand medicalspeak where negative is positive and positive is negative, etc... :sarcasm;
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I'd prefer to believe that a doc who spoke to me that way understood that I had a working brain and a good body of knowledge; I'd take it as a compliment, but I do get your point.
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Fistula surgery put off to July 29 as my motorcycle, me, and a deer had a disagreement about the right of way on a rural county highway last Sunday. Scraped the back of my left hand and required stictches, so vascular surgeon said he'd prefer not to take blood supply away from my left hand for the time being. makes sense to me. Kidney bopsy still "on" for Tuesday. Only to see if full of scar tissue (not treatable) or inflammation (potentially treatable).
Sorry I scared your distant relaative, MooseMom. A deer is distant relative, right?
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Very, very distant...
I sure hope you were the winner of that disagreement!
I'll be very interested to hear the results of your biopsy. Be sure to let us know, and also if you're able, give us some idea of what the next step might be.
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Deer + Motorcycle =Ouch!
Doc called and she said: "There is no contraindication to stopping your anti coagulant therapy, so we will proceed with the biopsy." Why do they talk like that???? Wouldn't it be easier to say: "you can stop taking your coumadin X days before the biopsy."? Oh well, I've been under treatment long enough to begin to understand medicalspeak where negative is positive and positive is negative, etc... :sarcasm;
Well, yu can always ask them to translate it into English - that usually stalls them for a minute!